1. How old are you? Less than 15 years of age 2 0% 16 years to 21 years 16 1% 22 years to 26 years 46 2% 27 years to 33 years 110 5% 34 years to 40 years 249 12% 41 years to 47 years 437 21% 48 years to 55 years 664 32% 56 years to 65 years 461 22% 65 years old + 88 4%   2073 100%

2. Are you male or female? Male 84 4% Female 1987 96% Prefer not to answer 2 0%   2073 100%

3. How long have you been suffering from CFIDS or Fibromyalgia symptoms? 0 to 1 year 45 2% 1 to 3 years 238 11% 3 to 5 years 359 17% 5 to 10 years 635 31% 11+ years 796 38%   2073 100%

4. What is your chief complaint regarding how FMS/CFIDS affects your health? Lack of Sleep 73 4% Constant Pain 769 37% Unrelenting Fatigue 412 20% Inability to Function Normally 438 21% Inability to be Productive 106 5% Added Stress 43 2% Other, Please Specify 232 11%   2073 100%

5. Did you have a precipitating event, illness or trauma may have contributed to this illness? Yes 1292 62% No 781 38%   2073 100%

6. How would you describe your spouse or family's support level and understanding of the nature of Fibromyalgia and/or CFIDS and how it impacts your lifestyle? Poor 425 21% Fair 682 33% Good 604 29% Excellent 362 17%   2073 100%

7. What type of questions have you been afraid or embarrassed to ask concerning these illnesses? (We are not collecting any person specific data with this survey so feel free to answer) 1032 Responses

8. What type of physician(s) have you seen in the past for your FM or CFIDs? MD - Family Practice 1486 72% MD - Internal Medicine 866 42% MD - Rheumatologist 1317 64% MD - Endocrinologist 297 14% MD - Physiatrist 384 19% MD- Speciality Fibomyalgia or Fatigue Practice 367 18% MD - Other 260 13% DO - Family Practice 327 16% DO - Rheumatologist 159 8% DO - Other 67 3% DC - Chiropractor 804 39% ND - Naturopath 245 12% RPh - Pharmacist 192 9% Other, Please Specify 615 30%

9. What type of physician(s) are you seeing now? MD - Family Practice 1063 51% MD - Internal Medicine 455 22% MD - Rheumatologist 509 25% MD - Endocrinologist 115 6% MD - Physiatrist 139 7% MD - Speciality Fibromyalgia or Fatigue Practice 249 12% MD - Other 122 6% DO - Family Practice 151 7% DO - Rheumatologist 45 2% DO - Other 25 1% DC - Chiropractor 312 15% ND - Naturopath 62 3% Other 46 2% Other, Please Specify 512 25%

10. How would you rate the current treatment you are receiving from your health care provider for your FMS/CFIDS condition? Poor 538 26% Fair 804 39% Good 541 26% Excellent 190 9%   2073 100%

11. Does the physician that is currently treating your condition have ... Specialized training with regard to FMS/CFIDS 444 22% A large patient base with similar/same conditions 563 28% Limited knowledge but still trying their best to assist you 942 47% Other, Please Specify 408 20%

12. How many medications are you currently on or have been prescribed to control your various symptoms? None 190 9% 1 to 2 prescriptions 552 27% 3 to 5 prescriptions 690 33% 6 to 8 prescriptions 279 13% 8 + prescriptions 362 17%   2073 100%

13. What medications are you currently on or have been prescribed to assist you with getting restful sleep? Not Applicable 274 13% Diazepam (Valium) 105 5% Lorazepam (Ativan) 169 8% Temazopam (Restoril) 111 5% Clonazepam (Klonopin) 291 14% Alprazolam (Xanax) 271 13% Diphenhydramine (Benadryl) 178 9% Zolpidem (Ambien) 461 22% Zeleplon (Sonata) 75 4% Trazodone (Desyrel) 298 14% Mirtazapine (Remeron) 56 3% Amitriptyline (Elivil) 478 23% Doxepin (Sinequan) 73 4% Other, Please Specify 951 46%

14. How is your current treatment being paid for? No Insurance - All Cash or Credit Card Payment 265 13% Some Insurance - Remainder Cash or Credit Card Payment 555 27% Mostly Insurance - Limited Out of Pocket Expense 832 40% All Insurance Payment 207 10% Other, Please Specify 214 10%   2073 100%

15. What medications are you currently on or have been prescribed to control your pain symptoms? Not Applicable 119 6% Tramadol (Ultram, Ultrcet) 620 30% Hydrocodone (Vicodin, Norco, Lortab) 584 28% Cyclobenzaprine (Flexeril) 641 31% Metaxalone (Skelaxin) 219 11% Carusoprodol (Soma) 197 10% Celecoxib (Celebrex) 417 20% Rofecoxib (Vioxx) 303 15% Valdecoxib (Bextra) 194 9% Ibuprofen (Advil) 638 31% Naproxen (Naprosyn) 431 21% Citalopram (Celexa) 164 8% Fluxetine (Prozac, Sarafem) 245 12% Paroxetine (Paxil) 211 10% Sertraline (Zoloft) 303 15% Venlafaxin (Effexor) 307 15% Gabapentin (Neurotin) 383 18% Acetaminophen (Tylenol) 568 27% Other, Please Specify 904 44%

16. In addition to prescription medications, what other treatment(s) are you receiving? (Please select all that apply) IV Therapy 105 5% Trigger Point Injections 257 12% Ozone Therapy 2 0% Massage Therapy 594 29% Physical Therapy 328 16% Nutrition Therapy (Supplements) 588 28% Hyperbaric Oxygen Therapy 3 0% Other, Please Specify 1115 54%

17. Please estimate the total cost for one months worth of prescription drugs (both RX and compounded) you purchase to treat your condition. $0 100 5% $1 to $50 468 23% $51 to $100 349 17% $101 to $200 359 17% $201 to $300 225 11% $301 to $400 132 6% $401 to $500 72 3% $500 + 150 7% Comments 218 11%   2073 100%

18. Please estimate how much you spend (CASH out of pocket) on treatments (besides prescriptions)for your FMS/CFIDS every year. Less than $500 863 43% $501 to $1000 418 21% $1001 to $2000 284 14% $2001 to $3000 200 10% $3001 to $4000 96 5% More than $4001 144 7%   2005 100%

19. Do you believe that changes in barometric pressure (weather systems) affect your sense of well being? Yes 1872 90% No 201 10%   2073 100%

20. What "alternative treatment" methods have you tried in the past? Reiki 197 10% Accupuncture 509 25% Chiropractic Manipulation 1046 51% Massage Therapy 1196 58% Accupressure 307 15% Other, Please Specify 831 40%

21. In the past 6 to 12 months, do you believe that your condition has .....? Improved Substantially 84 4% Improved Moderately 167 8% Improved Minimally 203 10% About the Same 404 19% Worsened Minimally 256 12% Worsened Moderately 440 21% Worsened Substantially 401 19% Other, Please Specify 118 6%   2073 100%

22. Rate the overall quality of your life before the onset of FMS/CFIDS and now. Scale of 1-7 1 Awful 2 Very Poor 3 Poor 4 OK 5 Good 6 Very Good 7 Great N/A 1. BEFORE FM/CFIDS 1% 21 1% 24 1% 26 4% 91 10% 212 40% 830 41% 851 1% 18 2. PRESENTLY 15% 314 21% 437 34% 701 22% 464 5% 112 1% 31 1% 11 0% 3

23. How has your FMS/CFIDS impacted your interpersonal relationships? On a scale of zero to five: 1 Significantly strengthened the relationship 2 Somewhat strengthened the relationship 3 Not impacted the relationship at all 4 Somewhat deteriorated the relationship 5 Significantly deteriorated : N/A 1. With your significant other ? 5% 105 12% 239 16% 330 38% 778 21% 435 9% 186 2. With your children? 4% 73 9% 192 28% 578 32% 658 6% 126 22% 446 3. With other family members? 3% 61 9% 193 38% 788 32% 665 11% 224 7% 142 4. With friends? 3% 54 8% 166 31% 637 34% 707 20% 418 4% 91 5. With colleagues and other employees? 1% 27 4% 83 25% 523 22% 449 19% 390 29% 601 6. With your employer? 2% 36 3% 68 23% 467 16% 339 21% 430 35% 733

24. Has your condition impacted your decisions on having children? Yes 394 19% No 1679 81%   2073 100%

25. How difficult is it for you to tell people you meet or know about your condition? I generally don't share it with people. 465 22% I only tell people I know well. 635 31% I get exhausted going into the details. 186 9% I tell my friends but no one at work for fear it will be used against me. 37 2% When I tell people I have it down to a short summary so it is pretty easy. 319 15% I always tell people so they have a better understanding and a raised awareness of what everyone who has FMS/CFIDS is dealing with. 275 13% I would rather not say. 34 2% Other, Please Specify 122 6%   2073 100%

26. How much time have you lost from work annually due to your struggle with FMS/CFIDS? None 232 11% 1 to 5 days 219 11% 6 to 10 days 161 8% 11 to 15 days 100 5% 16 to 20 days 72 3% 21 + days 274 13% Other, Please Specify 1015 49%   2073 100%

27. What activitie(s) have you given up in order to conserve your energy? Working 1030 50% Movies 497 24% Plays 327 16% Ballet/Symphony/Theater 261 13% Gardening 1138 55% Housework 1112 54% School activities 352 17% Playing sports 1006 49% Attending sporting events 616 30% Actively enjoying hobby 1117 54% Social gatherings with family and friends 1082 52% Playing with children or grandchildren 678 33% Other, Please Specify 694 33%

28. When you indulge in an activity, how long does it take you to recover afterward? Fast recovery 17 1% 30 minutes to 1 hour 57 3% 1 hour to 2 hours 87 4% 2 hours to 1 day 281 14% 1 day to 3 days 894 43% 3 days to a week 400 19% More than a week 103 5% Other, Please Specify 224 11%   2063 100%

29. Are you being treating for hypothyroidism? Yes 608 30% No 1348 66% Not Sure 91 4%

30. What type of Thyroid supplementation preparation are you currently taking? Not Applicable 1280 62% T3 (compounded) 106 5% T4 (compounded) 46 2% Cytomel 33 2% Synthroid 349 17% Armour 70 3% Other, Please Specify 289 14%

31. Do you belong to a local Fibromyalgia or CFIDS support group? Yes 157 8% No 1640 80% Belonged at one time 241 12% Unsure 14 1%   2052 100%

32. If you do belong to a support group, please rate how effective and helpful you find this activity: Not helpful at all 127 30% Slightly Helpful 124 29% Helpful 73 17% Very Helpful 67 16% Essential 37 9%   428 100%

33. Have you ever heard of the National Fibromyalgia Association (www.fmaware.org)? Yes 1345 65% No 709 35%   2054 100%

34. Have you read the book "Fatigued to Fantastic" by Dr. Jacob Teitelbaum? Yes 330 16% No 1709 84%   2039 100%

35. Have you ever heard Dr. Jacob Teitelbaum speak at any support group meetings, health fairs or other gatherings? Yes 57 3% No 1989 97%   2046 100%

36. Please tell us how important these items are in your treatment process: 1 Not important 2 Fairly Important 3 Important 4 Very Important 5 Most Important 1. A Doctor who takes his/her time and listens to you. 0% 7 1% 11 3% 57 31% 624 66% 1337 2. A Doctor who utilizes both prescriptions and nutrition to treat you. 2% 38 3% 54 13% 261 35% 706 48% 973 3. A Doctor's office where the employees are friendly and listen. 1% 14 3% 59 12% 238 37% 744 48% 975 4. The use of the latest therapies to treat my condition. 1% 28 3% 57 10% 205 29% 583 57% 1144

37. Would you be interested in attending a one day seminar to learn all about the latest therapies to treat your condition? Yes 1626 79% No 422 21%   2048 100%

38. If you would be interested in attending a seminar, how far would you be willing to travel? Up to 20 miles 582 34% Up to 50 miles 560 33% Up to 100 miles 319 19% Up to 200 miles 162 10% Anywhere in US 76 4%   1699 100%

39. If you would like to attend a seminar, please provide your address (we are not collecting any private information. 1446 Responses